Status
Not open for further replies.

brentonjb

Active member
Joined
Jan 20, 2011
Messages
49
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
FL
City
Orlando
Greetings everyone. I'm still going through the diagnostic process myself, but after an appointment with my Neuro earlier, I did some reading and came across a quote from here that somewhat confused me.

patricia1 said:
Hi Its me havent been posting for awhile. Hope everyone is hanging in there. I think I can help since I started with bulbar symptoms. First of all If you can move your tongue quickly side to side you dont have a muscle weakness there, even if your tongue vibrates or quivers ,alot of people have that when they stick out their tongues However if you have horseness a feeling of a lump in your throat slurred speech difficulty with liquids and or solids shortness in your tongue scalloped edges on the tongue unable to move your tongue firml;y against you cheeks and try filling your cheeks up with air and poking the side of your cheeks and the air in your cheeks dont resist Then I can assure you its ALS becaause nothing else presents with all of that. Hope that clears bulbar onset Pat

While I know it's only one quote from one person, are the highlighted symptoms above (hoarseness and scalloped tongue) commonly known/thought to point towards an Bulbar ALS diagnosis? My Neuro noticed fasiculations in my tongue and face (lips) today, but said they were very fine and the tongue almost resembled a tremor (he didn't seem very sure regarding the tongue).

Regardless I am currently experiencing both scalloped tongue and voice changes. While the hoarseness and sometimes slurring comes and goes, the edges of my tongue are definitely scalloped (look like rigid teeth marks). Other than that I have widespread fasiculations and occasional pain in some limbs (mainly my hands, feet and calves). However, to date, not experiencing any weakness, though I am occasionally stiff.

I really appreciate anyone's insight / knowledge on the subject in advance.
 
I see that you've been doing some deep digging in the archives here, because the post you are quoting comes from a thread that ran its course in late 2007. Congratulations on your diligence and your determination.

In all of that reading, what did you see said about these two symptoms in particular with regard to a typical presentation of bulbar ALS? What were the most common presentation symptoms of bulbar ALS and where did these two fall in terms of how often they were cited as initial presenting symptoms? Did you see other explanations for either of those conditions that took bulbar ALS off the table as a differential diagnosis? How many cases did you find where people presented with those symptoms initially and those symptoms caused a doctor to diagnose them with bulbar ALS? How many cases did you find where bulbar ALS presented with other symptoms and was diagnosed, but the patients developed these two symptoms later in the disease process?

Sorry to have nothing but questions for you, but perhaps a more Socratic line of inquiry will provide insight for you where other, more direct methods have failed.
 
See what happens when someont thinks their symptoms are ALS for sure. Now most bulbar symptoms start with slurring and swallowing issues. Patricia isn't right about all that stuff. Even here, you can't believe everything you read.

AL.
 
Brenton.
I think it is unwise to get everyone started again as you have had pages of advice already and your Doctor said he was referring you to the Mayo for testing. So why dont you stop stressing yourself out by dredging through old posts on this site. Just hang in there and enjoy life while you await your appointment. Remember people who post on this forum are not Doctors so you cannot read to much into peoples posts. You need to leave your problems with the experts.
I hope your appt comes soon and some of your stress will be allayed.
 
Ok Brenton, a couple of errors in your thinking. One you highlighted 2 things in a list of like 7 different symptoms she posted. Notice there are some key components that would make it bulbar. Like unable to move your tongue quickly, unable to tent your cheeks with your tongue, unable to hold air in your mouth while puffing your cheeks and pressing on they. All signs of weakness. Now let's talk bout the most common causes of the two things you posted. Scalloped tongue, most often caused by grinding your teeth at night. BTW I have scalloped tongue. Hoarseness of voice, common cold, reflux, allergies....basically anything that could irritate the throat or cause congestion.

So by themselves they are not worrisome things, but if they were accompanied by weakness (true weakness), then that would be different. If you can do all the strength things patricia listed you are OK.
 
Thanks for the replies everyone.

I had my first appointment at the clinic today actually. Following a very extensive Q&A and in-office exam, the doctor told me he doesn't think ALS is in my future. Additionally he seemed a bit mystified that my other Neuro may have suggested it as a possibility. Though I'm sure it's possible I may have planted some sort-of seed, asking as many questions as I did about ALS.

Regardless, I was a bit relieved. He did notice fasiculations in my tongue & ankles, as well as saying my left calf was smaller than my right. But given that those two combined with a brisk reflex in my knees are the only signs of possible MND, he said it wasn't worth exploring at this time.

He did say, however, that due to the white matter changes found in my MRI, as well the other symptoms I"m experiencing (and my age), he's strongly considering MS as a possibility, but can't say for certain until a spinal MRI / Tap can be preformed

Likewise he too he was really concerned and perplexed as to why I have brain atrophy, but noted that further testing may provide an answer.

Anyway if anyone is interested in my story I'll continue to provide updates. I think that it may perhaps be beneficial to newer members (like myself) who are going through similar diagnostic stages. At least in this particular section of the forum.
 
Hello everyone. I have the usual MND test's coming up (EMG / Nerve), and had a question - possible concern.

Is it safe to stay on Ativan during these tests? I've read a previous thread in which a member here (Bala80) had two clean EMG's, but later was diagnosed with ALS after an abnormal third one. Citing that he/she was taking muscle relaxants, and may have skewed the initial tests.

Honestly reading their post's was quite disheartening, and to be honest, scary. Though I'm aware everyone's journey is different.

Thank you in advance.
 
That is a question that you need to consult you Doctor about. I have never been asked what medication I am on before an EMG, but it's your Doctores decision. Give him a ring in plenty of time,incase you need a washout period.
 
Ask the neurologist who will be performing the procedure for his/her advice about the Ativan.

Just curious -- doesn't it bother you just the tiniest bit that you are pinning your hopes of being diagnosed with ALS on posts from members who left here years ago, with the overwhelming majority of them as undiagnosed when they left as they were the day they joined the site? And, of the handful of those who claimed to have gotten a diagnosis, all but a couple left the site almost immediately afterward, never to be seen in the forums again?

You'd think they'd hang around and make sure that their atypical story got shouted from every rooftop, especially since some of the same folks who gave them "questionable" advice -- proved by their eventually being diagnosed -- are still advising new folks with the same advice they were giving out then.

It's your call to make, but in my opinion, your fear mugged your rationality and is leading you on a merry chase with ALS.

Good to see that your new neuro is concerned about your brain atrophy.

Good luck to you.

PS -- you should have been very relieved that this neuro believes that ALS/MND is not worth exploring at this time.
 
Ativan will have absolutely no effect on the EMG, even though Bala80 (who's story I don't believe for a second) "thought" similar drugs affected his. Glad to see you're moving away from your unwarranted ALS fears and listening to people who actually know what they're talking about (your neuro) instead of crap from the internet. Good luck with everything.
 
Ask the neurologist who will be performing the procedure for his/her advice about the Ativan.

Just curious -- doesn't it bother you just the tiniest bit that you are pinning your hopes of being diagnosed with ALS on posts from members who left here years ago, with the overwhelming majority of them as undiagnosed when they left as they were the day they joined the site? And, of the handful of those who claimed to have gotten a diagnosis, all but a couple left the site almost immediately afterward, never to be seen in the forums again?

You'd think they'd hang around and make sure that their atypical story got shouted from every rooftop, especially since some of the same folks who gave them "questionable" advice -- proved by their eventually being diagnosed -- are still advising new folks with the same advice they were giving out then.

It's your call to make, but in my opinion, your fear mugged your rationality and is leading you on a merry chase with ALS.

Good to see that your new neuro is concerned about your brain atrophy.

Good luck to you.

PS -- you should have been very relieved that this neuro believes that ALS/MND is not worth exploring at this time.

Thanks for the responses Aly, Wright, Trfogey. I can't stress enough how much you're responses and support mean.

I've left a message with his nurse regarding the drug, and honestly only asked here because it's been a few days and I haven't heard back from them yet. As I said before, I do have trouble with anxiety, which is what lead me here in in the beginning - after noticing my initial twitching. Well, that and Dr. Google.

As far as the merry chase goes, don't get me wrong, I am definitely relieved at this point that this particular doctor doesn't think it's ALS. The reason I say that is because my initial Neuro appointment suggested it as a possibility, based entirely off my fasiculations and fatigue. While completely disregarding my abnormal brain MRI.

I have no desire to be diagnosed with ALS, and my heart truly goes out to those battling their illness. I have rationalized (finally), that based one the fact that my symptoms get better at times (aren't progressive), my age, the sensory pain, and the fact I do have an abnormal MRI - there's little chance I have this terrible disease.

Is it rare for someone with MS to have fasiculations? According to literature yes, but I've read several stories from patients online who note them as well. Mainly comments from this article here: Fasciculations (Muscle Twitches) and MS?

Ultimately at this stage I feel very fortunate, and I know that many here would trade places with me in a heartbeat. To be honest, as moronic as it sounds, if the Doctor told me I had MS today, I would be happy and relieved. To finally receive some closure, and get any doubt of MND out of my mind. Lord knows (and I'm sure many here as well) I've worked myself up enough over something I likely don't have.

Thank you again. Appreciate any further responses.
 
Brenton, Myokymia seems to occur more in MS. Myokymia can be hard to distinguish from Fasciculations. I have both and they certainly feel very different. Myokymia can be just a benign thing that happens , a bit like Fasciculations.
Have you ever had an eyelid that twitches repeatedly? That is the most common site for Myokymia to occur. Everyone gets it occasionally.
Aly
 
Status
Not open for further replies.
Back
Top